Friday, July 29, 2011

Do You Agree With the Perspective Provided Here On Patient Information Access?

The following appeared a few days ago and I thought it was worth putting up for discussion.

Healthcare Needs Help On Transparency

The industry will need to get over its skittishness about sharing electronic health records with patients. Because patients will demand full access to their digital records, plain and simple.

By Chris Murphy, InformationWeek

July 14, 2011

Dr. Neil Calman wrapped up Tuesday's InformationWeek Healthcare IT Leadership Forum in New York City with a few predictions, including one portending radical change in people’s access to their health records.

He started with the big picture. "If there's one thing that's going to revolutionize healthcare--whether it's IT, ACOs, any aspect of health reform--what you're going to see is patients taking back healthcare from their providers," said Dr. Calman, a physician who is CEO and cofounder of the Institute for Family Health, which runs 17 health centers in the Bronx, Manhattan, and the mid-Hudson Valley in New York State.

Then Dr. Calman got more specific, including one prediction destined to raise some blood pressure:

"You're going to see patients want complete and unfettered access to their medical records. Forget all this about where we're going to keep the data to ourselves for seven days before it's released to patients, or we're going to create models of abstracted data to give to people. They will have total and complete, instant access to their medical information, whenever, in multiple formats, however they want it."

Each of those modifiers -- complete, unfettered, instant -- would rip away a security blanket that healthcare providers and health IT leaders cling to when they start talking about giving patients access to their medical records.

Instant: Some providers give patients access to lab results, but they wait several days so that doctors have time to talk with their patients about the results.

Complete: Should patients be allowed to read their doctors’ notes? To access every lab result? To see images they aren't qualified to assess?

Unfettered: This will mean letting patients have their full health records -- and not just through a hospital's sanitized portal, but as a raw download they can take with them, Dr. Calman predicted. And they'll have to offer a means for the patient to make comments, or corrections in places where they think the information is wrong, he said. Dr. Calman's fellow panelist, Karen Marhefka, associate CIO for UMass Memorial Healthcare, said giving patients the ability to comment on records was a concern when UMass Memorial assessed vendors for its planned patient portal. Its lawyers advised against allowing other sources into the providers' clinical data, even if comments could be identified as coming from the patient.

Dr. Calman predicted that every major electronic health record system or portal will soon allow patient input, and that it shouldn't be controversial. "Every single thing we do in medicine depends on what the patient told us," he said. "… The subjective part of every progress note is us writing down what the patient told us. We don't have any way of independently verifying it. But all of a sudden, when the patient can write it themselves, it becomes something the lawyers are all freaked out about. Anyway, these are the transformations that are going to take place. They just change the way we think about everything in healthcare."

More here:


My feeling is that this position is at rather the ‘bleeding edge’ but that there will emerge over the next few years a reasonable number of consumers who would agree with this view. Whether there are enough people who, if such a service were available, would actually use it we will have to just wait and see. The adoption of PHRs makes one wonder but on the other hand the importance for many people to keep track of their clinical story and their preparedness of some to do the work argues against that.

My view is that we should see if offering a service attracts a reasonable amount of use in a confined geography (say one capital city or those insured by one provider) and if there is substantial interest and use then go from there.

There does often seem to be a tendency to want access to material on the part of the public, but once granted a good deal of the interest wanes. Testing is the only way to know.


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